Well, my mom was discharged from rehab last week...although I don't think she was ready.When she was discharged, her PT stated she was able to walk 30 feet with contact guard and walker, do 6-7 stairs, and most ADL's with minimal assistance. The concern at rehab was she was getting aggitated when my dad wasn't there, and trying to get out of the wheelchair without assistance (aka she was a liability) Of course they neglected to say that those 30 feet were all she could walk for the day, as she was in bed or the wheelchair when she wasn't in PT.

The reality is that just transferring her from the wheelchair to the car was enough to tire her out that she was unable to climb the 3 stairs into the house. She fell out of bed twice in her sleep the first night home, prompting an ER visit for xrays. We had a hospital bed delivered the next day to stop her from falling.

We are fortunate enough that my dad financially planned for "when the time came" and has 12 hour caregivers in the house and a bed alarm at night. It has been emotionally difficult for him to admit that the time to use those funds has come.

Since the stairs are such a challenge, she is spending all day upstairs. Only getting out of bed with pt/ot. Dad is putting in a stair lift next week (upon advice from the care supervisor) so she can be downstairs during the day.

She sleeps most of the day...dozing on and off, and her appetite varies greatly..will finish 1 meal, and then nothing for the next 3. She was supposedly fully continent at the rehab, but has been soaking thru depends every night. She has a bedside commode, but is forgetting to ask for help to get up to use it. She isn't attempting to get up, as the alarm would go off if she were.

Her speech is minimal..mostly yes and no answers.

My dad is so optimistic that the pt/ot is going to drastically change the situation, and that she will be able to leave the house again for more than a needed dr appt. My gut is telling me that she's just done fighting the battle. The rehab put her on the "bridge to hospice" program...so she could finish the pt for the hip replacement and then have hospice take over her care.

I guess my question is it worth all this? The stair lift, all the faces coming in and out (caregivers, pt, ot, social workers, visting nurses) is exhausting for my dad...I can only imagine how my mom feels about it (again, she doesn't talk much). Would we be better off going straight to hospice and letting her have some peace? I don't think dad is ready for her to stop fighting the battle.

The visiting nurses say only time will tell if pt will improve her mobility. It's been 5 weeks since the surgery. I guess this is where my dad and I balance each other....he has so much hope and optimism, and I am the realist. Should I squash that hope to bring my mom some peace?

Thu May 31, 2012 9:07 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Mom's home from rehab

Your father seems to be in denial, yes. But if he didn't do all he could for your mother, he may be unable to forgive himself after she is gone. Painful though it may be for you, it might be wise to embrace your father's plans for now, even knowing that the pt/ot regimen probably won't gain any independence.

Your father may have to use the chair lift himself someday. We had a chair lift on the stairs in our last house and my husband refused to use it. They are fun for the grandkids, though.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu May 31, 2012 10:01 am

hpetrilli

Joined: Fri Jan 13, 2012 11:51 amPosts: 43

Re: Mom's home from rehab

Good point! I'm sure dad wants to do all he can! And in the long run maybe give him some peace with no regrets as well. I just want mom to be as comfortable as she can be. She did an advance directive long ago, and very clearly stated that she did not want anything to prolong her life once she reached this stage...including feeding tubes and antibiotics, although we have treated UTI's as comfort measures.

And I'm sure dad may get some use from the chair lift one day...even to bring up the laundry! My 6 yo nephew will love it!

I would continue letting your dad do whatever he needs to do. He has to come to the realization on his own terms.

It seems that the care supervisor is in agreement with your father's outlook. Otherwise, why recommend a lift?

Thu May 31, 2012 11:40 am

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Mom's home from rehab

I would guess that the PT before hospice is an attempt to make transfers easier, not necessarily to regain mobility.

I'm trying to imagine how I'd feel in your dad's place -- if our kids were attempting to help me be "realistic." I don't think I would resent them, but I would ignore them. This is a spousal decision.

Coy's health directive also says no measures to prolong life, but in practice, that is not always as clear-cut as it sounds. In this case, the PT, OT, Hospital bed, stair lift -- none of these are measures that prolong her life. If they work, they could improve the quality of the life she has left. If they don't work, nature will take its course in spite of them. I don't think they are prolonging her suffering, do you?

Approaching the end stage is heart-breaking. It is absolutely wonderful that medical knowledge and technology present us with so many options -- and absolutely terrifying, too. How can we ever be sure we are exercising the right options?

As the daughter who loves both Mom and Dad and wants the best for each of them, you are in a very painful place. My heart goes out to you. You sound extremely thoughtful and caring. Your parents are lucky to have you.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Thu May 31, 2012 2:20 pm

Julianne

Joined: Sun Aug 29, 2010 5:46 pmPosts: 610

Re: Mom's home from rehab

Jeanne,

Having two frail and failing quite elderly parents, I find it very difficult to read your assertion that a parent's care is a "spousal decision." In my opinion, it is a family decision, with great deference to be given to a CG spouse.

To suggest that children's feelings, beliefs and opinions should be ignored, whatever they are, is to ignore the significance of the family unit and parent-child relationships. If nothing else, it is always possible that a parent shared his/her feelings with a child instead of a spouse because the spouse was, for instance, in denial or otherwise unreceptive.

Instead of ignoring anyone, there is a delicate balance that should be achieved that gives respect to all. Why make this any more painful than it already is?

Julianne

Thu May 31, 2012 2:42 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Mom's home from rehab

You are right, Julianne. I don't mean to make it an us-vs-them with spouse and children. Ideally the family does work together. All feelings and viewpoints should be respected.

I'm just coming at this from the spouse's role. If Dad has been advised to put a stair lift in, and Dad wants to do it, and Dad can afford to do it, then even if the children wonder if it is worth it, it is still Dad's decision.

(Substitute sloped sidewalk/ramp for stair lift and Mom for Dad in the previous sentence, and you have my current situation.)

Of course, I am also coming at this from the perspective of a well spouse. When both parents are in ill-health and especially if both parents have dementia, I think that changes the roles considerably.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Thu May 31, 2012 3:08 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Mom's home from rehab

Quote:

When both parents are in ill-health and especially if both parents have dementia, I think that changes the roles considerably.

This does make a big difference. But I do have to agree that the spousal relationship is closer than any other and should play the biggest role in decision making when at all possible. When we marry we take vows that most of us take very seriously.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu May 31, 2012 3:24 pm

Julianne

Joined: Sun Aug 29, 2010 5:46 pmPosts: 610

Re: Mom's home from rehab

I have divorced parents and a remarried father. I wouldn't dream of trying to interfere with my stepmother's decisions about things like whether to put in a chair lift or a sidewalk ramp. However, I would be very concerned if my stepmother started making decisions about my father's wellbeing and care that I knew he would not want and she didn't listen to me or any of his children.

Of course, there is more than one potential situation involving spouses--whether it is a first, intact marriage with mutual children, a second marriage with step-parents taking care of their spouses, or what have you. I recognize the special status of a marital relationship, obviously, but unfortunately not all marriages are good and not all spouses are closer to each other than they are to any of their children. It's important to be circumspect about making blanket statements about families because one size certainly doesn't fit all.

Julianne

Thu May 31, 2012 3:52 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Mom's home from rehab

" It's important to be circumspect about making blanket statements about families because one size certainly doesn't fit all."I think this really nails it! Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Thu May 31, 2012 4:07 pm

hpetrilli

Joined: Fri Jan 13, 2012 11:51 amPosts: 43

Re: Mom's home from rehab

Just to clarify, I do think that all the "equipment" in the house is making things easier for mom, and bringing her some comfort, I am not denying that. All the equipment and care giving is helping our family to honor her often expressed final wishes of remaining at home. Dad did plan for this financially to a point. Both my parents worked hard their whole lives to save for a retirement they never got to enjoy.

I support my dad in any decision he makes regarding my mom. He is her spouse and her caregiver, and give he does. He would do ANYTHING for her, including put his own health at risk, which is exactly what is happening. He had surgery a year ago for prostate cancer. While he has stayed cancer free, he suffered a fistula which has brought him a slew of medical issues of his own. While my brother and I constantly urge him to take care of himself, he has been putting off his own appointments and procedures due to issues with mom. I can see what the stress of trying to help him as much as I can is doing to me and my family....I can't imagine what it is doing to his own health.

Some days he talks about his finances with such worry. Just today he said "i have enough to cover a nursing home for 18 months when the time comes...but I don't think she's ready for a nursing home yet." This is what breaks my heart. The doctor told us in January she has about 6-12 months based on her weight, mobility and decline of ADL's...and that was before the hip replacement which has created a steep decline. He has chosen to "forget" this fact, but continues to worry about the money.

For mom, I just want her to be safe, comfortable and with out pain. I hope that the pt will make transport easier, and that we can take her outside. I just don't want our desires for her to get better to cause her more stress and confusion.

Sorry for the long posts, but really needed to get some of this out ~heidi

Thu May 31, 2012 8:58 pm

jeanted

Joined: Tue Apr 24, 2012 5:00 pmPosts: 78Location: Fayetteville, NC

Re: Mom's home from rehab

Oh gosh, Heidi. I feel your pain. I'd just gone through similar situation with my children and upgrading the downstairs bathroom for Ted. They were quite distressed thinking that I was wasting our time and money and creating more chaos in our already upturned world. But, my point was, if Ted was able to use it for one day it was worth it to me. It turned out to be a blessing and we used it for 3 months until Ted went to the facility. He has also been able to use it when he has come home for visits several times. The kids appreciate it too and we use it every day.

At the same time, I understand your concern especially. As a family, we all are in this together and want to take care of everybody, including the caregiver. My girls each told me how much they worried that I was wasting my time and wanted to be sure I was not setting myself up for a big disappointment if he never got to use it by the time it was done. It's just like you, they care about and love both of us.

I love the comments about future use of the stair lift, they made me smile thinking of the grandkids. Let me tell you, every time I'm in that bathroom I think of the happiness I had being able to give Ted a proper shower. Or, the grin I got when my sister took pictures of the handicap toilet roll holder so she could make sure to get it installed for her husband's father.

I've also had some disappointment with wasting good money on a couple of special apparatuses (apparati?) that never worked for Ted. I decided to step away from that and donated one of the canes to a neighbor who'd had back surgery. I plan on taking the other to a Parkinson's group meeting to see if anyone else might benefit from it.

Thu May 31, 2012 10:05 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Mom's home from rehab

Heidi, you are doing a wonderful job -- the best you can, how can it get any better than that?

My word "ignore" was too strong. I don't think I've ever ignored the views and feelings of my sons or stepdaughters. I hope I listen respectfully. But I have to do what I believe is best for Coy and for me, as his wife. And I don't always have energy left over to "be there" for our children's feelings. What is "practical" and "sensible" may not match what is emotionally necessary. I think that is the point several of us were trying to share. Whether all this effort is worth it may not totally be a practical decision.

But what if your Dad's denial or outlook or level of effort is harmful to him? Naturally you want to help not only your mother but your father as well. Certainly as caregivers we can wear ourselves down and not even see what we are doing to ourselves. It would be good to have a loved one -- daughter, nephew, cousin, whatever, to pay some attention to our needs. I love it that when Coy's daughter calls, she not only asks how he is doing, but she asks how I am, too.

Speaking for myself, specific offers of help are more likely to be successful than generalized lectures. "Mother, you have to take better care of yourself," does not go over so well. "Why don't you go for a walk while I'm here with Dad? I know you want to get in a little more exercise," plays a lot better. "When you make that appointment for your eye exam, let me know. I'd like to go out to lunch with you in that neighborhood."

You want to reduce your Dad's worry and stress about money but being too blunt with information he is not ready to accept might only add to the stress. Something like "Dad, you've done so very well to be able to provide for Mom during this terrible illness. You are not only a good caregiver but a good provider. If the time comes when there isn't enough to cover the medical expenses, I'll help you with the Medicaid application process." At least that is how I'd like to be treated.

In her very helpful book, Loving Someone Who Has Dementia, Pauline Boss talks about the need to have time to take in shocking news. If Dad simply isn't ready yet to accept the shocking news that the love of his life is not expected to live more than a year, see if you can give him time without the stress of worrying if he is in denial, etc. The real challenge here is that you, too, are reeling from shocking news. And the person who might ordinarily be counted on to help you through it -- a parent -- is just not able to be fully there for you. I hope you find some support among your new friends on these forums.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Thu May 31, 2012 11:44 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Mom's home from rehab

Hi Heidi - so sorry for the very stressful situation your family is dealing with.

"I just don't want our desires for her to get better to cause her more stress and confusion."

Perhaps one of the things that can help is to accept that the help you are giving your mom (and dad) is not likely to result in her getting better, thereby setting everyone's expectations high and then being disappointed over and over again. At some point in the grieving process, in order to move ahead, we have to accept what is really going on on or we stay in the same emotional rut, which is not helpful to our mental or physical health in the longrun.

Seeing a counselor who specializes in working with dementia CGs, attending a support group, etc. can be very helpful for support for all of you. Do you have a local group where you could take your dad so he can hear and connect with other people's stories? That can be a tremendous help, and anything that helps him is also going to help you and your own family.

Sending you a big hug. This is SO hard. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Fri Jun 01, 2012 8:42 am

hpetrilli

Joined: Fri Jan 13, 2012 11:51 amPosts: 43

Re: Mom's home from rehab

Thanks Lynn!That is exactly what I am worried about...my dad setting himself up for a huge disappointment. The mom that my brother and knew has been gone for about a year, and we have been grieving her loss. I think dad is just now realizing the end is coming. This is all hitting him like a ton of bricks. I even got a call from the VNA supervisor yesterday that she is worried about him and how sad he looks. He's not one for support groups. He's hard of hearing and can't always follow the conversation. I'm hoping she gets back on hospice soon so he can get some one on one support as well.

You cannot post new topics in this forumYou cannot reply to topics in this forumYou cannot edit your posts in this forumYou cannot delete your posts in this forumYou cannot post attachments in this forum